Maeve Boothby O'Neill - articles about her life, death and inquest

One point I forgot to make is that one of the reasons Maeve didn't tolerate a particular NG trial was because the feed they tried her with was the same as one she'd been given & didn't tolerate orally. I would have expected trials of a much wider range of feeds to find one that was most tolerable for her but there wasn't any testimony on this that I recall. Also I didn't go in to the details of the hygiene issues discussed above as this is a public thread but it's clear that Maeve was struggling with PEM from low levels of contact as is typical in very severe ME.

Inquest has now begun again and Dr Patel is up. He was asked about his view of ME and gave the exact same answer as other witnesses - complex, chronic, of unknown aetiology.

Also, apologies, but I'm struggling far too much to do today what I've done the past two days. I'll still be listening in from my bed and will try to jot down anything I think is unusually important but hope that others will be able to provide updates from today's session.

 

Jonathan - thank you for producing this https://www.qeios.com/read/T9SXEU
I agree with the way you have dealt with the issue of psychological theories (and indeed physical illness theories) - you've acknowledged the beliefs and then highlighted that they don't have any evidence base and indeed aren't beneficial in any case.

 

I wonder if the healthcare staff thought that challenging Maeve would work i.e. "tube feeding while raised (40 degrees from horizontal?)" or "well, your choice not to be treated"?

 

Their 'defense' seems to be that Maeve was safe in the Eating Disorders
Ward, she was the one who declined the NG tube, they respected her wishes etc, they considered the alternatives but nothing else was safe, so they listened to her decision to go home. It was unfortunate sad etc and definitely not their fault.

Not mentioning

That the attitudes she met on the ED Ward may have been inappropriate

That the nurses were used to treating patients who refused to eat and how that would affect her care

That she vomited on the NJ tube trial

That her mother disputed the calories she was being fed

That they never really considered her hydration needs

That her treating doctors didn't believe that ME was a physical disease

That alternatives in tube feeding were never really explored

That Maeve wanted to go home as she was being badly treated and knew all of the above

 

Dr Patel giving evidence
Maeve had a SALT assessment
Was given Fludrocortisone at some point there’s a record that this stopped?
Sarah Boothby is now asking questions - she finishes by thanking Dr Patel and says they were a very good consultant.
Now there’s a break


with thanks to ME Advocates Ireland for tweeting updates

 

Interesting insight -thanks.

 

I think these tidbits tell us all we need to know about the true opinions held by this witness.

 

Thanks for sharing.

This lack of curiosity and engagement baffled me for a long time. It infuriated me at times too. I was incensed by the flippant attitude of the Infectious Diseases doctors at Liverpool in dishing out 'advice' about suggesting I try CBT/GET. It was just wot they did. And they were closed to any discussion that this might be in anyway anything other that helpful, useful etc.

Even the consultant psychologist leading the cfs therapy service told them frequently that they did not offer GET since 2005. And cbt/other therapies/pacing where appropriate and only supportive, not aimed at cure. Ironically I was trained in CBT and could see that there was no evidence base. It was something for the ID doctors to refer too and to allow them to discharge. No curiosity or follow up. No support for my GP. Merely a somewhat misleading letter to my GP confirming diagnosis and telling them I'm fat and lazy, and unwilling to engage. No mention that I thought their support suggestions had no credible evidence base.

The lack of curiosity and interest is I think largely a self protective behavioural and psychological avoidance bias/response. If they don't look, they can avoid the scale and horror of the situation. It avoids them approaching psychological discomfort and distress. It also absolves them of the need 'to do something' if they don't know. When they do look, perhaps it is too big, too scary, too overwhelming and they opt out. Flight and freeze responses.

Ironically pwME are hypothesised that they are fear avoidant of activity. Perhaps the medical professional needs to take a wee look in the mirror.

Without interest, curiosity and knowledge nothing much is going to change.

We need curiosity and interest from trained minds to have light bulb moments. The more persistent doctors and researchers are the more likely newer ideas that can be tested will come to light. This is one reason I find it frustrating that, for example, rheumatology is now distancing itself from diagnosis and care of FMS patients. They are now diagnosed in NHS by senior physios. If there is little or no medical interaction or interest, how is anyone going to figure out how to understand and solve a medical problem like FMS? Or ME. Similar diagnosis and medical discharge from NHS for pwME. No follow up, no development, no engagement. How does this change? I suspect with biomarker and/or credible, useful treatment. But how does the medical professional get to this point if it is largely disinterested? How can this change?

 

There are biomedical teams in the UK and Netherlands who really do have the skills and insight to be looking in good places. They are not physicians but if they find something the physicians will take an interest. I know that a lot of patients feel people are not looking but to be honest there has been an awful lot of looking and even clutching at straws in the hope of having found something but techniques available in the past have produced nothing. The likely useful avenues are limited but I actually think people are on to them.

 

Sean O’Neill is now questioning Dr Patel
He asks about artificial feeding policies - Coroner interrupts to say they will be spending a whole day looking at this


Just to note, it’s clear from X twitter posts that Dr Patel is giving the “stock” answer we’ve heard from all the Drs that we don’t know the cause of ME, won’t say if it’s physical, just treat the patient

 

It didn't ought to need saying, but it appears from the inquest so far that doctors give due weight to the question "What are the risks if I do this?" but not to "What are the risks if I don't?".

 

Questioning finished, Dr Patel release and break for lunch

 

Dr Patel has been released. Inquest now on a lunch break. This afternoon's witness will be Dr Prague (sp?)

Something I picked up on not mentioned in the Tweets above was that he had tried to "encourage" Maeve to sit up over a period, trying smaller increments such as 10 degrees with a view to increasing the angle over time. The idea that this could be improved through encouragement, I thought, was notable.

 

Thanks for that. Appreciated.

 

@dave30th Did you sense that the coroner would have picked up on the significance of Dr Warren’s comment (when he is reported to have said that PEG feeding carries risks and that inserting a PEG "would medicalise Maeve to a degree")?

If not, might there be an opportunity for you to bring it to Sean or Sarah’s attention? Or indeed anything else that you have picked up on that you feel may have been overlooked?

 

Some tweets from Dr Strain:

 

One more:

 

Coroner just before the lunch break: “It has been an emotional and grueling week for everyone." Very true.